The Newborn Screening Technical assistance and Evaluation Program (NewSTEPs), in close partnership with SCID Compass, and the Newborn Screening Translational Research Network (NBSTRN), hosts a National Severe Combined Immunodeficiency Disorder (SCID) Webinar every quarter. All are welcome to join.
For more information about the SCID Quarterly Webinars and topic suggestions, please email Ruthanne Sheller at Ruthanne.Sheller@aphl.org.
The August 2019 webinar agenda can be found below:
Overview of SCID Research | Jennifer Puck, MD, University of California San Francisco
The Primary Immune Disease Treatment Consortium (PIDTC) has accumulated extensive information regarding the natural history of SCID with vs. without newborn screening (NBS). SCID infants identified by NBS are younger, smaller, and more healthy than most infants identified prior to screening. Contrary to what we originally imagined, NBS SCID patients are in many ways not comparable to infants born into families with a prior SCID child. We now need to establish what are best practices regarding isolation, prophylaxis, and timing for treatment. We have found that infections happen, despite screening. Why and how can we prevent them? Furthermore, genotype matters, and "personalized" treatments are increasingly important. Very rarely, SCID is missed by TREC screening, and we need to understand how this happens and why.